Telling My Twins Their Birth Story Changed Their Relationship

For the first five years of my identical twin boys’ lives, I couldn’t tell another adult their birth story without crying. How could I begin to share it with them?

Many of my twin mom friends wanted their children to know all the facts – especially for their health history. Others feared that labeling one twin “first born,” or “oldest,” could affect both kids’ self-esteem.

I didn’t know how it might affect the boys, so we chose not to go into detail. My sons knew only that they’d had Twin-to-Twin Transfusion Syndrome (TTTS,) a placental disorder which happens in one of 1,000 pregnancies. At the time the boys were born, TTTS was most often fatal for both babies. (Surgical interventions exist now, but both babies still only survive 50% of the time.)

With TTTS, the babies share a placenta. Due to a malformation, Twin A pumps blood across to Twin B. Twin A’s heart does more work, and Twin B’s becomes weaker. In our case, Axel was Twin A – the donor, and Aidan was Twin B – the recipient. One twin is often dangerously smaller, but they usually need each other to survive.

During the pregnancy, I tried to manage my fears about the babies’ safety, meditating and doing prenatal yoga to ease my panic. During ultrasounds at our weekly perinatologist appointment, the fluid ratios were not good, and Axel was lower and seldom moving. I believed he was working hard to even things out – basically keeping his brother alive. Aidan floated around above him, frequently kicking me in his care-free existence.

Eventually, the fluids balanced out, and the boys were miraculously born safely at 37 weeks. Then I lost seven pints of blood and spent the next five days in the ICU. It was hard to talk about.

They had delivered Axel first. He was weaker and smaller and struggled to nurse. Ultimately we mastered it, and both boys grew into healthy toddlers, to my relief.

Aidan evolved as the Alpha twin, “helpfully” speaking for his brother in class, and instigating most of their rough wrestling matches. Axel usually acquiesced.

Their attitudes about each other differed too. We’d separate the boys for dates with each parent for one-on-one time. At the mall with me, Axel was anxious. “Do you think my brother’s okay?” he’d ask. “It’s not fair if I get ice cream, and he doesn’t. Can we bring him some?”

Aidan never seemed to miss his brother, nor did he worry about him. In the back seat of my husband’s car on their way home, a more self-centered Aidan would declare, “I bet Axel will be so glad to see me!”

Over time, Aidan grew more dominating and manipulative, and the physical battles escalated. Aidan hid Axel’s toys, stole his snacks at school, and won smack downs that ended with Axel in tears and sometimes bloody. We lectured, yelled, gave timeouts and tried physical separations. Nothing worked. I felt like I was failing them.

One night when they were eight, the boys sat playing checkers at the kitchen table. Axel cried in frustration that once again Aidan had supposedly cheated and won the game. I’d had it. I looked over at my husband. “What if we told them their story?” I asked. He nodded. I had worried the full story might make Axel resentful or cause Aidan to feel guilty. But now, I just hoped it might help Aidan be more compassionate toward his brother.

We told them of our terror during the pregnancy. I had talked to them in my stomach every day, telling them to work together and be a team. My husband shared how we could see on the ultrasound screen that Axel always seemed focused and working. We told the boys how they’d been given a less than eight percent chance of survival. We explained the concept of donor and recipient.

It took Aidan a while to process the story, but Axel didn’t seem surprised. He’d always felt responsible for his brother. But hearing the story appeared to give Axel validation, and more confidence. I cheered silently watching him begin to stick up for himself more.

Gradually Aidan became kinder, more respectful. He’d let Axel choose their game or his game piece first. If he were going upstairs to get socks, he’d bring a pair for his brother. Their wrestling became more playful, less aggressive. I praised Aidan’s thoughtfulness.

I got an email from their sixth-grade health teacher. “They told me their TTTS story,” she said. “But don’t most of those babies die?”

Without my knowing, it had become a story they told together. How the identical brothers battled the odds. I overheard them telling friends. Aidan described Axel as the hero.

The boys play on the same baseball team – sometimes one pitches to the other who’s catching. They perform constantly changing break dance routines, but somehow they’re always in sync. If locked out of the house, one climbs on the other’s back to key in the garage code. They travel through the neighborhood together, tag-teaming their candy sales pitch to raise funds for their outdoor education trip.

Recently at the breakfast table, the boys told me they’d had the same dream. They were trapped in the back seat of a car with no adults. Axel climbed in the front, started up the vehicle, and drove them safely away.

They caught on to the symbolism before I did.

“Mommy,” Aidan said. “I’m really lucky my brother saved me.”

I had worried so much about whether knowing the whole drama of my pregnancy and their birth would be disturbing for the boys. Instead, it brought them closer.

Ellen Nordberg‘s stories have appeared in the Chicago Tribune, The Denver Post, The Huffington Post, Scary Mommy, Errant Parent, and numerous anthologies. She has performed her humorous twin essays in several Colorado Listen To Your Mother shows and is currently a co-producer of the Boulder show. She lives outside of Boulder where she spends much of her time rescuing her middle school age twins’ remote control drones off neighbors’ roofs.

Comments

Hi Ellen! Very interesting read. I’m also a TTTS mom, and I was lucky enough to have both boys survive as well. Our story was a little different, Twin A was the recipient and Twin be the doner. At 18 weeks Twin B had almost no amniotic fluid and we have the operation. Over the next ten weeks, things seemed to even out and we were cautiously optimistic. Then Twin A stopped growing – and the doctors concluded that Twin A’s sac only had animal access to the placenta, and wasn’t getting what he needed to grow. We delivered at 30 week. I don’t know how to tell the story to the boys. The surgery saved Twin B’s life, but ultimately it affected Twin A (who has autism). My twin B is like Axel, he’s so protective of his brother, almost like he already knows. Thank you for sharing your story.

Ellen this is such a beautiful story with a beautiful ending. I had never heard of TTTS. I am saving your story to send to my friends some don’t even have children. Prayers and blessings to the mom that posted whose child turned out autistic, there is a blessing in there somewhere.
Once again, beautiful story.